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Graft vs host disease (GvHD)

When you have a stem cell transplant, your donor’s cells will form your new blood and immune system. Your immune system’s job is to attack things that don’t belong in your body. It keeps your body safe from infections caused by bacteria, viruses and other things that are not part of you.

When you’ve had a stem cell transplant, there are still small differences between your new developing immune system and other cells in your body. As a result, your growing immune system may harm some of the cells in your own body because it sees them as ‘different’. This is called GvHD.

Some GvHD can be a good thing because it means that your new immune system is working and is likely to be attacking any remaining or returning disease. This can be referred to as ‘graft versus leukaemia effect’ or ‘graft versus tumour effect’. However, too much GvHD can cause unwanted complications and side effects. At its worst, GvHD can be life threatening.

GvHD is not yet fully understood and it’s difficult to predict who will get it and who won’t. We know that about half of people who have a transplant will get GvHD. Often, it’s very mild but for some people GvHD can be more severe and can affect their quality of life.

Once classed, GvHD is then given a grade which is used to guide treatment and to help monitor improvements. Grading is based on symptoms and the number of organs involved. Some transplant centres slightly adapt the grading system they use, so it’s best to check how they measure yours.

GvHD can occur at any time, so it’s important to report any symptoms after transplant to your team. However, the most common times to experience GvHD are:

When your immune cells start to come back and appear in your blood, usually a few weeks after your transplant.

When the medication that suppresses your immune system is reduced, usually a few months after you go home. The immune cells become more active, notice there’s a difference in your body’s cells and may start an attack.

Some symptoms are quite general and don’t always mean you have GvHD. Your medical team will perform tests that might include biopsies (skin or liver GvHD) or use a small camera to look closely at the organ (stomach or lung GvHD). These tests can confirm the GvHD diagnosis.

Treatment for GvHD varies depending on the organ involved. It can be broken down into:

Local - This includes creams for skin GvHD, drops for eye GvHD and physiotherapy for GvHD of the joints.

Oral - Immunosuppressive medication (cyclosporine, mycophenolate or tacrolimus) will be given before your transplant to suppress your immune system and allow new stem cells to grow. If you develop GvHD, the dose might need to be increased for a while to control your symptoms. Oral steroids may also be used for immunosuppression. Once the GvHD has improved, these medications will slowly be reduced again.

Intravenous - Might be used if oral medications don’t control the GvHD. This might require an admission into hospital for treatment.

In some cases, acute or chronic GvHD cannot be controlled with these medications so further treatment, such as extracorporeal photopheresis (ECP) or referral to a specialist might be needed.

‘GvHD is usually very treatable - it's all about keeping things under control and finding the right balance of medications.’Debbie Anderson, Anthony Nolan Clinical Nurse Specialist

SkinSymptoms: Acute and chronic skin GvHD symptoms are very similar. Your skin is likely to become dry, red and itchy and it could affect multiple areas of your body. This can affect your appearance, ability to regulate your temperature and lead to infection if the skin is broken.

Treatment: Some cases need no treatment and improve naturally. Mild cases are treated using moisturises or steroid cream. Medication to supress your immune system in more severe cases and treatments such as ultraviolet light and extracorporeal photopheresis (ECP) are possible options.

MouthSymptoms: Your mouth may become sore and dry because you aren’t producing enough saliva. This may lead to ulcers forming and can make your food taste unusual.

Treatment: Visit your dentist regularly if you have mouth GvHD. Practising good oral hygiene and using a steroid mouthwash may also help.

LiverSymptoms: To begin with you might not feel anything but your doctor might find out that something is wrong by testing your liver function. If it becomes worse you may become jaundiced, (yellowing of skin) and your skin may itch. Your liver may also swell in size, causing abdominal pain.

Treatment: Steroids and other drugs to suppress your immune system.

LungSymptoms: Your lungs can lose some of their flexibility and elasticity, making you feel short of breath, wheezy and prone to coughs and chest infections. You might find exercising becomes more difficult. If you experience any of these symptoms you should contact your medical team straight away.

GenitalsSymptoms: Women may experience vaginal dryness, narrowing of the vagina and ulceration in advanced cases - causing pain and discomfort during sex.

Men may experience sensitivity or a rash on their penis and it could be uncomfortable to pass urine. They may also experience problems maintaining an erection.

Treatment: Women will be referred to a gynaecologist that may prescribe a steroid cream or gel to combat dryness. Men will be referred to a urologist and may also be prescribed a steroid cream to reduce sensitivity.

‘If there are 100 symptoms of GvHD - I've had 99. My skin, hair, scalp, eyes, mouth, lungs and intestines have been affected. I've had aching joints and muscles, sinus problems and thickening of the skin around my ankles - they look like my old nan's legs now!’Paul, had a stem cell transplant in 2014 , you can read about his experience with GvHD here.

ECP is a treatment used for acute and chronic skin, liver and oral GvHD. It aims to destroy the white blood cells that cause GvHD by combining a medication called methoxypsoralen (8-MOP) with ultraviolet (UV) light.

The procedure involves being attached to a machine that removes your blood through a cannula and drip. It then separates the white cells from your blood, before returning the blood to your body. The white cells are then exposed to UV light and 8-MOP to destroy the cells that cause GvHD, and then returned to your body.

Treatment can take 1–2 hours. You might start by having two appointments per week, every fortnight. Over time (depending on your response) treatment cycles are likely to reduce. ECP for acute GvHD responds quite quickly, whereas ECP for chronic GvHD can take six months or more before any improvement. In some cases, treatment can last 12–18 months or longer.

Referral for ECP can seem daunting, due to the length of treatment. Sometimes patients delay it as long as possible – but the timing of ECP is crucial for it to be most effective. It’s essential that if your doctor suggests a referral for ECP you consider it carefully. Leaving it too long could reduce the effectiveness of the treatment.

Report any changes in your GvHD to your transplant team immediately. GvHD can worsen quickly if not treated appropriately. Call your CNS or a member of the team who can offer advice and in most cases prevent the need to come into clinic.

Take your immunosuppression medication as advised. This is one of the most important medications you’ll need to take.

GvHD and its treatment can have knock-on effects so you might be referred to other healthcare professionals such as a dietician or physio. It’s important that you follow their advice to prevent weight loss, manage fatigue and maintain fitness.

Treatment for GvHD can put you more at risk of infection, so report any change in your temperature to your transplant team immediately.

‘It’s really important to take the medication including creams, eye drops and mouth washes regularly. It’s also helpful to keep up with other things where you can, like exercise and catching up with friends. It can improve your quality of life between what can be a gruelling schedule of clinic visits’Dr Fiona Dignan, consultant in haemato-oncology at Manchester Royal Infirmary, you can read her blog on GvHD here.